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Communicating with Patients and Families about End of Life Care

March 3rd, 2020

Presented by Daniel Maison, MDNational Medical Director, Seasons Hospice & Palliative Care

Successful Completion Criteria

• Log in to virtual classroom

• Remain for entire presentation

o 1 hour

• Participate and ask questions if you have them via the chat box in the lower right corner

• Complete evaluation

o You will be redirected to a post-activity survey when webinar ends

o Your CE/CME certificate for 1 credit hour(s) will be emailed to you within 24 hours.

Send questions to communityeducation@seasons.org and our Community Education team will be happy to help.

Declarations

• This program is provided to you by Seasons Hospice & Palliative Care.

• There is no commercial support for this educational event.

• The speaker declares that they are an employee of Seasons Hospice & Palliative Care, which provides the service described herein.

• Planners, presenters, faculty, authors and content reviewers declare no conflict of interest:

oDan Maison, National Medical Director

oEllen Hoekstra, Community Educator

• Approval by ANCC/ASWB/CCMC/AAFP does not indicate endorsement of any products.

Communicating with Patients and Families about End of Life Care

March 3rd, 2020

Presented by Daniel Maison, MDNational Medical Director, Seasons Hospice & Palliative Care

Objectives

• Describe the clinician’s role in communicating with patients and families.

• Discuss strategies for effective communication about terminal diagnosis.

• Discuss barriers to the delivery of communicating bad news to patients

and families.

• Explore the concept of benefit vs. burden of treatment options and

importance of Advanced Directives and informed choice.

Communicating About End Of Life:The Essentials

• There are points in a patient’s health journey when it is absolutely critical to guide

the patient and family with good communication

• We are the experts of such communication

• Effective communication is key to provide this essential support

• Establishes the foundation to allow us to provide the best possible outcome

Communicating About End Of Life:Common Scenarios

• Breaking bad news

• Prognosis exploration

• Transitioning from curative to palliative care

• Expectation clarification/advance care planning

• Existential questions- “Why me?” “Why now?”

• Discipline specific questions- medical, psychosocial, and spiritual

Communicating About End Of Life:The Graying Of America

United States Administration on Aging

0

10

20

30

40

50

60

70

80

1900 1920 1940 1960 1980 1990 2000 2010 2020 2030

Year (as of July 1)

Figure 1: Number of Persons 65+, 1900 – 2030(numbers in millions)

Communicating About End Of Life: The Disconnect

In the last year of life…

Most patients want:

• To talk about advanced

directives

• To decrease intensity of

care

• Wish to die at home

What often happens:

• Doctors and other healthcare

professionals reluctant to discuss

• Majority of Medicare spending occurs

in last 12 months of life

• Plurality of patients still die in the

hospital

Communicating About End Of Life: Traditional Medical Domains

• Diagnosis and Treatment

• What physicians are comfortable discussing

• Prognosis

• Often under-explored

• As a profession we tend to be overly optimistic when we do discuss

Communicating About End Of Life: Physician Bias in Prognostication

• In a study of 343 physicians:

• Overestimation of prognosis by almost 5.3x

• Type of illness did not matter

• The longer the doctor-patient relationship, the less accurate the

prognosis

Christakis, BMJ. 2000;320:pp.469-472

Communicating Prognosis hasa BIG impact

Patients change their end of life decisions based on perception of prognosis:

• 371 adults were asked about CPR preferences:

• Before learning true survival probability- 41% wanted CPR

• After learning true survival probability- 22% wanted CPR

• Adults with chronic illness with 12 month life expectancy- 5% wanted CPR

Reference: N Engl J Med. 1994 Feb 24;330(8):545-9.

The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation. Murphy

DJ, Burrows D, Santilli S, Kemp AW, Tenner S, Kreling B, Teno J.

Communicating About End Of Life: Health and Retirement Study

Sample:

• 3,746 patients >60 years who died between 2000 and 2006

Methodology:

• Proxy/Family member “exit interview”

Results:

• 42% required decision making in final days

• 70% of these lacked decision making capacity (DMC)

• 2 out of 3 of those without DMC had Advanced Directives (AD)

Reference: N Engl J Med. 2010 Apr 1;362(13):1211-8. Advance directives and outcomes of surrogate decision making before death.

Silveira MJ1, Kim SY, Langa KM.

Communicating About End Of Life: Advanced Directives & Surrogate Decision Making

Many patients lose decision making capacity near end of life; thankfully, the

awareness of the importance of an Advanced Directive is increasing.

• Patients who had a Health Care Proxy (HCP) were less likely to die in

hospital

• Patients who had prepared an Advanced Directive received their

preferred care

Communicating About End Of Life: Barriers

“Why should I think about dying? I am too busy living…”

“Don’t talk like that. You’re not going to die, you’ll live forever…”

“Would he want hospice care…? We never got a chance to talk about it.”

“I don’t want her to think I am giving up on her”

How many of these have you heard?

Communicating About End Of Life:Barriers

• Social – Personality and Communication Style

• Cultural & Religious – Views of Death

• Professional – Role of Health Care Provider; lack of

education; comfort level

• Organizational – Medical Care System

• Legal/Regulatory

Emotional

• Patient and family distress, feeling helpless/out of control

• Clinician may feel a sense of failure; own grief over losing a patient (e.g. feelings of sadness, guilt)

• Fear

• Sense of abandonment

Time Sensitive with Rapid Status Changes

• Stress of situation

• Disease progression/crisis situation

Communicating About End Of Life:Barriers

Communicating About End Of Life: Style

• Active Listening

• Empathy

Communicating About End Of Life:Encourage the Conversation

• Does the patient/family want to talk?

• Choose the right setting/comfortable

environment

• Assess the patient and family’s

understanding

• Clarify understanding of current

situation; level set of expectations

Communicating About End Of Life:Encourage the Conversation

Major Strategies:

• Open ended questions

• No established agenda to facilitate open discussion

• Owning personal thoughts to minimize threatening nature of conversation

• I am curious…

• I am worried…

• I wonder…

Can you talk me

through what’s

been going on?

Communicating About End Of Life:Encourage the Conversation

Other Strategies:

• Be curious about patient and family’s perspective by listening to their “story”

• Express views and feelings with “I feel…”

• Take time to talk and listen

• Identify goals

• Problem solve together

Communicating About End Of Life:Encourage the Conversation

Considerations before the conversation:

• How much does the patient/family want to know?

• If the patient doesn’t want to know, who do they want to you to share information

with?

• Are there family members or loved ones that need to know?

• Who is making decisions?

• Has the patient discussed their values, preferences, and beliefs with anyone?

Communicating About End Of Life:Starting the Conversation

Open Ended Questions:

• How are things going for you/your family?

• How do you think you/your loved one is doing?

• What do you understand about your condition?

• What has the doctor told you/your family?

• What are you hoping for from this treatment?

• How can we support/help you?

• Help me to understand…

• I am worried…

Communicating About End Of Life:FIFE Model

Feelings

Ideas and explanations of the cause

Functional Impact on daily life

Expectations

EPERC* Fast Fact #17

Feelings (Related to the illness, especially fears)

• What are you most concerned about?

• Do you have any specific fears or worries right now?

• I imagine you have had many different feelings as you have coped with this illness…

Sometimes people have fears that they keep to themselves and don’t tell

anyone about…

Communicating About End Of Life:FIFE Model

Ideas

(Explanations of the cause)

• What do you think might be going on?

• What do you think this pain means?

• Do you have any ideas about what might have caused this illness?

Communicating About End Of Life:FIFE Model

Functional Impact on Daily Life(Explanations of the cause)

• How has your illness affected you day to day?

• What have you had to give up because of your illness?

• What goals do you have now in your life? How has your illness affected your goals?

• How does this illness affect important people in your life?

Communicating About End Of Life:FIFE Model

Expectations

(Of the doctor and the illness)

• What do you expect or hope I can do for you today?

• Do you have expectations about how health care providers can help?

• What do you hope this treatment will do for you?

• What are your expectations about what might happen with this illness?

Communicating About End Of Life:FIFE Model

Communicating About End Of Life: NURSE Model

Naming it – “It seems as if…”

Understanding- “I am hearing you say…”

Respecting- “I am impressed that…”

Supporting- “I am here and I will be here…”

Exploring- “Help me understand…”

Communicating About End Of Life:Five Wishes

Wish 1:

The person I want to make health care decisions for me when I can’t is…

Wish 2:

The kind of medical treatment I want or don’t want is…

Wish 3:

How comfortable I want to be is…

Wish 4:

How I want people to treat me…

Wish 5:

What I want my loved ones to know is…

www.agingwithdignity.org

Communicating About End Of Life: MOLST

• Medical Orders for Life Sustaining TreatmentoVariants called ‘POLST’, Physician

Orders for Life Sustaining Treatment

• State-specific forms for advance medical directives

Communicating About End Of Life: Consider this…

“The next time you must let someone know they are dying, the best way of doing this may be to say, ‘You are dying.’ It’s more than just semantics. Using the word ‘die’ will clarify our conversations with patients and let them know that death doesn’t need to be considered unnatural or a failure. Reintroducing words like ‘death’ and ‘dying’ into those conversations will allow us to take better care of our patients as they live, and as they die.”

--- Scott R. Berry, BSc, MHSc

“Just Say Die,” Journal of Clinical Oncology, Vol 26, Number 1, Jan 1 2008

“As a nation, we must move from a stance characterized by avoidance and powerlessness to one in which this most significant life event is approached with the same kind of planning, emotional preparedness, sense of efficacy and active involvement that we strive for in other domains of life. The evolution of conversations at the end of life may hold the key to this transition”

--Larson, D. PhD, Tobin, D. MD, End-of-Life Conversations

Evolving Practice and Theory, JAMA 2000, 284:1573-1578

Communicating About End Of Life: Consider this…

Communicating About End Of Life: Resources

▪ Aging with Dignity

www.agingwithdignity.org

▪ EPEC: Education on Palliative and End-of-Life Care

www.epec.net

▪ EPERC: End-of-Life/Palliative Education Resource Center

www.eperc.mcw.edu

▪ Caring Info

www.caring-info.org

Communicating with Patients and Families About End of Life: Q & A

Please use the chat box in the lower right hand corner to ask questions. Our moderator will relay them to the presenter to answer live.

Post Activity-Survey and References

When the webinar ends, you will automatically be redirected to the post-activity survey. You must fill this survey out to receive your CE/CME certificate.

References:• Ngo-Metzger, Q., August, K.J., Srinivasan, M., Liao, S. & Meyskens, F.L (2008). End-of-life care: Guidelines for patient-centered communication. American Family Physician, Jan

15;77(2), 167-174.

• Muurman, B., vanMunster, B.C., Korevaar, J.C., Abu-Hanna, A., Levi, M. & de Rooij, S.E. (2008). Prognostication in acutely admitted older patients by nurses and physicians. Journal of General Internal Medicine, Nov 23(11): 1883-1889.

• Sinuff, T., Dodek, P., You, J.J., Barwich, D., Tayler, C., Downar, J., et al., (2015). Improving end-of-life communication and decision making: The development of a conceptualframework and quality indicators. Journal of Pain and Symptom Management, 49(6), 1070-1080.

• Bergenholtz, H., Timm, H.U. & Missel, M. Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliat Care 18, 62 (2019). https://doi.org/10.1186/s12904-019-0448-z

• Pino M, Parry R, Land V, Faull C, Feathers L, Seymour J (2016) Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying. PLoS ONE 11(5): e0156174. https://doi.org/10.1371/journal.pone.0156174

• Which Critical Communication Skills Are Essential for Interdisciplinary End-of-Life Discussions? Mark Pfeifer, MD and Barbara A. Head, PhD, CHPN, ACSW AMA J Ethics. 2018;20(8):E724-731.

• How to Make Doctors Think About Death End-of-life treatment guidelines would help families, physicians and nurses confront the inevitable with care and compassion. Theresa Brown, a hospice nurse, is the author of “The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. New York Times, April 27, 2019

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